Cork Carer of the Year: We have to fundraise to provide whatever our sick son needs

Cork CarePlus Carer of the Year Brenda O’Connell-Barry looks after her son Fionn, who has an extremely rare illness.

The four-year-old was recently diagnosed with having the genetic mutation NACC1, a neurodevelopmental disorder that can cause severe epilepsy.

Fionn is one of nine children in the world diagnosed with NACC1 and the only child in Europe known to have it.

Brenda and her partner have to fundraise to get what their son needs to make as comfortable as possible.

“We find it humiliating to fundraise for Fionn but we can’t provide what he needs and, unfortunately, there is so much that he does need,” says Brenda.

Fionn, who was born prematurely at 36 weeks in August 2014, has a tube inserted in his stomach for liquids and medications because he has difficulty swallowing.

He cannot walk, stand or even sit unaided. He cannot talk and has a visual problem called cortical visual impairment.

Brenda gave up her job as a playschool manager to look after Fionn full-time.

Her partner, Trevor, an electrician, took a year off work after the couple were told their child was not expected to live more than six months.

“Trevor just had to go back to work because we have a mortgage and bills to pay,” says Brenda.

The family live in Ballyhea, near Charleville in north Cork.

Their home has recently been extended to make it more comfortable and accessible for Fionn and his parents plan to make a little garden and play area in the spring.

The couple, who have no other children, will have to raise money for a ceiling hoist in the house.

They also need a wheelchair- accessible vehicle.

“Every day is different with Fionn,” says Brenda. “Some days are good and some days are really bad.”

The only treatment that has given Fionn any relief is cannabidiol (CBD) oil that is available over the counter.

“We started using the oil in September and found it reduced his agitation cycle from nine days to three or four,” says Brenda.

“It costs €195 for 30ml and that will last around three to four days.”

“We tried so many other drugs that were prescribed for him — adult doses and even drugs not approved for use in children, but none of them worked.”

It has been very tough going for Brenda and Trevor but the couple believes they are blessed to still have Fionn in their lives.

We love him more than the sun, the moon and everything in the world. He knows us and we know he loves us because of the way he looks at us and cuddles into us. 

"If he is upset and we pick him up and hold him he will relax. He holds our hands. He will grab a finger and hold it as tight as he can,” she says.

Asked about her hopes for Fionn, Brenda said she is not expecting miracles. She just wants him to be happy and comfortable.

“I just don’t want him to be in pain,” she says.

“I would love people to understand the ongoing expense involved when you have a child like Fionn.”

Brenda will be among 25 family carers and young family carers from across Ireland attending the Family Carers Ireland CarePlus Carer of the Year awards ceremony in Dublin today.

To donate to the Fight for Fionn Campaign, go to gofundme.com/FightforFionn.